A recent conversation with Georgia (age 2, almost 3), which was brought on by the topic of eating at preschool, and her new allergy alert bracelet:
Me: "So you can wear this bracelet to remind people of your allergies."
Georgia: "Yeah! It will be so great! And then the food will be safe."
Me: "Well....no, not necessarily. The food might still not be safe. You can just eat our food. We'll give you safe food. Because, well, you know...some other grown ups are not quite as good as mommy and daddy at reading the ingredients. So let's just eat our food, okay?"
Georgia: "Right."
Me (seeing a chance to practice): "Does Georgia eat peanuts?"
Georgia: "Nooooooo."
Me: "Or tree nuts?"
Georgia: "Noooooooo."
Me: "Or cucumbers?" (Just checking here, to see if she has any clue what she's saying.)
Georgia: "Nooooooo."
Me: "Actually, cucumbers are safe, sweetie. You can eat cucumbers."
Georgia: "Some people can't eat cucumbers. But we can eat them."
Me: "Um. Yeah. I guess so. But you can definitely eat cucumbers."
Me again: "So, anyway....no peanuts."
Georgia: "Right."
Me: "And no tree nuts."
Georgia: "Right."
Me: "And no fish."
Georgia: "Right. I can't eat fish. Well, I can't eat orange fish. I mean gold fish. I can't eat gold fish."
(Oh crap...this is really devolving. Is she talking about goldfish crackers now?)
Me: "Well, you can eat goldfish crackers, right? Yes. You can eat goldfish crackers, honey. But you just can't eat real fish."
Georgia: "Right."
I think what we can conclude here is that my oh-so-smart two year old may tell you at any given moment that she is allergic to cucumbers and goldfish.
Thursday, July 1, 2010
Wednesday, June 30, 2010
Raising Your Child's Awareness vs. Freaking Them Out
I recently read an interview of a psychologist studying the social and emotional toll of coping with food allergies. Specifically, the "shocking" levels of stress in mothers of children with food allergies.
I guess there was nothing shocking to me in the interview, but I took note of the following quote from Dr. Rebecca Knibb:
That sounds about right to me. So, how do you teach your child to better understand his or her food allergy in order to keep them safe, without scaring them in the process? How do you go about hiding your "shocking" levels of anxiety from your sponge-like children? : )
My daughter is not yet 3 years old, and we are trying to gradually increase her awareness of her own food allergies and what that means as far as what she can and can't eat. This is especially important since she'll be starting preschool in the fall, surrounded by well-meaning adults and children who may occasionally offer her food that she should not eat.
However, we have never once told her something like, "You could die." I don't think she even gets it that plants die, or that bugs die when you squish them, so the last thing we need is for her to live in fear for her own life. I don't think any toddler should be burdened with such a heavy thought, but dare I say, our Georgia is an especially sensitive one. (Understatement of the century.) We have an age appropriate allergy book that mentions hives, coughing, itching, and that sort of thing, but if you asked Georgia, I think she'd tell you that her allergies might give her hives. If you asked her the follow up question of, "What is a hive?" I think that she might or might not be able to answer that. But again, please keep in mind that she's only 2.
So, it's all very weird. Some days she'll say things that make me feel proud of our efforts, like maybe she's really "getting" it. She's pretty good at asking us, "Do you have the EpiPens?" when we leave the house. (Not because we normally need a reminder, but more so that if she is ever with a new babysitter or relative that she will hopefully ask them the same thing.) And then on other days, someone will ask her if she wants a peanut butter sandwich, and she'll answer yes without hesitation, which is disappointing. But it's not surprising that when you're two, and have relied on trusted adults to meet your every need, that you don't exactly stop to question, "Wait - is this safe for me?" at every turn. It takes practice to instill this behavior.
Once again, there is no particular conclusion to this post. Obviously, I do have a certain level of anxiety related to Georgia's food allergies, though I try to keep it in check. Maybe this blog is a good outlet for me to write things down and get them off my chest, rather than passing my worries on to my daughter? It all goes back to that whole Goldilocks Principle thing -- I hope we are teaching her enough to be careful, but not so much as to be scared.
I guess there was nothing shocking to me in the interview, but I took note of the following quote from Dr. Rebecca Knibb:
If the parents cope well, this behavior is learned by the child. Children are very perceptive and learn vicariously, i.e. they learn by watching how parents react to situations. If a parent is very anxious, the child tends to be anxious also.
That sounds about right to me. So, how do you teach your child to better understand his or her food allergy in order to keep them safe, without scaring them in the process? How do you go about hiding your "shocking" levels of anxiety from your sponge-like children? : )
My daughter is not yet 3 years old, and we are trying to gradually increase her awareness of her own food allergies and what that means as far as what she can and can't eat. This is especially important since she'll be starting preschool in the fall, surrounded by well-meaning adults and children who may occasionally offer her food that she should not eat.
However, we have never once told her something like, "You could die." I don't think she even gets it that plants die, or that bugs die when you squish them, so the last thing we need is for her to live in fear for her own life. I don't think any toddler should be burdened with such a heavy thought, but dare I say, our Georgia is an especially sensitive one. (Understatement of the century.) We have an age appropriate allergy book that mentions hives, coughing, itching, and that sort of thing, but if you asked Georgia, I think she'd tell you that her allergies might give her hives. If you asked her the follow up question of, "What is a hive?" I think that she might or might not be able to answer that. But again, please keep in mind that she's only 2.
So, it's all very weird. Some days she'll say things that make me feel proud of our efforts, like maybe she's really "getting" it. She's pretty good at asking us, "Do you have the EpiPens?" when we leave the house. (Not because we normally need a reminder, but more so that if she is ever with a new babysitter or relative that she will hopefully ask them the same thing.) And then on other days, someone will ask her if she wants a peanut butter sandwich, and she'll answer yes without hesitation, which is disappointing. But it's not surprising that when you're two, and have relied on trusted adults to meet your every need, that you don't exactly stop to question, "Wait - is this safe for me?" at every turn. It takes practice to instill this behavior.
Once again, there is no particular conclusion to this post. Obviously, I do have a certain level of anxiety related to Georgia's food allergies, though I try to keep it in check. Maybe this blog is a good outlet for me to write things down and get them off my chest, rather than passing my worries on to my daughter? It all goes back to that whole Goldilocks Principle thing -- I hope we are teaching her enough to be careful, but not so much as to be scared.
Tuesday, June 15, 2010
Up in the Air
Remember how I was talking about flying with Georgia on a recent post about our trip to Florida? Well, as of then I was feeling pretty chill about the whole thing.
Now, the Department of Transportation is soliciting comments about what, if anything, to do about peanuts on commercial airlines. You can go here to read more or leave a comment if you have an opinion on the matter.
To put it bluntly, reading the comments of other people with opinions on this matter has left me feeling like I'm going to hyperventilate. Crap, can Georgia really DIE from airborne peanut dust in a plane? Should I not even be letting her fly? Someone please talk me down from the ledge now.
I didn't even leave a comment for the DOT yet because I don't know where I come out on the issue. Reading this formal response to the DOT from FAAN made me feel a lot better. I guess sometimes listening to experts and research results is better than letting yourself be inundated with personal anecdotes. I'd recommend reading FAAN's letter if you are looking for an educated, well written response from the "allergy community", especially if you would put yourself in the "I just don't get it" category or the "it should be your problem, not mine" category.
In other news, I had lunch with my friend Kim this Saturday and thoroughly enjoyed picking her brain about her practices living with a nut allergy for the past 30 years. Contrary to the whole DOT comments thing, talking with Kim had me feeling like if anything I could relax my standards a bit more. She always makes me feel better. I'll write more about all of that later.
As an aside...Kim flew into town for the weekend.
As a further aside...I'm guessing that Georgia is not so sensitive as to die from peanut dust on a plane, or she would've been screwed on our last flight. But with no tests for severity, and no real exposure history/ingestion reactions to rely on, I have no way of being 100% sure.
Now, the Department of Transportation is soliciting comments about what, if anything, to do about peanuts on commercial airlines. You can go here to read more or leave a comment if you have an opinion on the matter.
To put it bluntly, reading the comments of other people with opinions on this matter has left me feeling like I'm going to hyperventilate. Crap, can Georgia really DIE from airborne peanut dust in a plane? Should I not even be letting her fly? Someone please talk me down from the ledge now.
I didn't even leave a comment for the DOT yet because I don't know where I come out on the issue. Reading this formal response to the DOT from FAAN made me feel a lot better. I guess sometimes listening to experts and research results is better than letting yourself be inundated with personal anecdotes. I'd recommend reading FAAN's letter if you are looking for an educated, well written response from the "allergy community", especially if you would put yourself in the "I just don't get it" category or the "it should be your problem, not mine" category.
In other news, I had lunch with my friend Kim this Saturday and thoroughly enjoyed picking her brain about her practices living with a nut allergy for the past 30 years. Contrary to the whole DOT comments thing, talking with Kim had me feeling like if anything I could relax my standards a bit more. She always makes me feel better. I'll write more about all of that later.
As an aside...Kim flew into town for the weekend.
As a further aside...I'm guessing that Georgia is not so sensitive as to die from peanut dust on a plane, or she would've been screwed on our last flight. But with no tests for severity, and no real exposure history/ingestion reactions to rely on, I have no way of being 100% sure.
One more thing...I find it interesting that the DOT is soliciting comments on other issues like waiting on tarmacs and baggage policies, but this peanut issue is garnering about 6 times as many comments as any other issue. Obviously a hot button topic. You would think people would care more about waiting 8 hours on the tarmac than not being served their precious peanuts, but apparently not.
EDITED TO ADD: I think the DOT dropped the whole peanut ban proposal. Well, it wasn't even a proposal, really. They were just soliciting comments, and the peanut farmer lobbyists went nuts. (ha ha. pun intended.) It's a shame.
EDITED TO ADD: I think the DOT dropped the whole peanut ban proposal. Well, it wasn't even a proposal, really. They were just soliciting comments, and the peanut farmer lobbyists went nuts. (ha ha. pun intended.) It's a shame.
Monday, June 7, 2010
Rhubarb Crisp
This isn't going to become a recipe blog. There are tons of existing resources for allergy friendly recipes out there already. However, as I was throwing together this rhubarb crisp tonight, it occurred to me that it's free of most allergens, and well, delicious, so I thought I'd share. It's very seasonal and easy to make.
1) Wash rhubarb and cut into small chunks -- about 4 cups worth, more or less.
2) Mix chopped rhubarb with 1 c sugar and 1/4 c flour and toss it all in a baking dish.
3) Combine the following in a bowl: 2/3 c brown sugar, 1/3 c butter (cold and cut into pats or smaller), 1/2 c flour, 1/2 c oats, and 1 tsp cinnamon. I mixed this all together using a pastry cutter cuz I own one and I'm cool like that. You could also use your fingers or two forks. Get it to a kinda crumbly consistency.
4) Shake crumbly topping on top of the rhubarb mixture in the baking dish.
5) Bake at 350 degrees for 30-40 minutes. It should be bubbly around the edges, with the topping having come to a brownish crisp. (Mine took the full 40. Damn!)
Yum.
Question is: will we share with our allergic daughter? Hmmm....
1) Wash rhubarb and cut into small chunks -- about 4 cups worth, more or less.
2) Mix chopped rhubarb with 1 c sugar and 1/4 c flour and toss it all in a baking dish.
3) Combine the following in a bowl: 2/3 c brown sugar, 1/3 c butter (cold and cut into pats or smaller), 1/2 c flour, 1/2 c oats, and 1 tsp cinnamon. I mixed this all together using a pastry cutter cuz I own one and I'm cool like that. You could also use your fingers or two forks. Get it to a kinda crumbly consistency.
4) Shake crumbly topping on top of the rhubarb mixture in the baking dish.
5) Bake at 350 degrees for 30-40 minutes. It should be bubbly around the edges, with the topping having come to a brownish crisp. (Mine took the full 40. Damn!)
Yum.
Question is: will we share with our allergic daughter? Hmmm....
Monday, May 10, 2010
Florida Vacation Report
I went into this vacation fully expecting that we'd have at least 1 allergy "incident", not because I was trying to be pessimistic, but because I was trying to be realistic and prepared. We were on a seafood-laden island with a child with a fish/shellfish allergy after all, plus Georgia did have a reaction while we were there last year. I figured the risk of cross-contamination in restaurants was pretty high.
Fortunately, we had no incidents! (Unless you count the mysterious hive that Georgia got on her wrist on the flight down, but more on that later.) Our lack of allergic reactions was admittedly due in large part to the fact that we only made it out to eat with the kids once the whole week. We were lucky to be staying in a condo with a full kitchen. Our reluctance to eat out was only partly driven by allergy concerns; it was much more related to juggling beach time with naps and bedtime, and the difficulty of getting everyone showered, dressed and out the door. At any rate, I'll take it!
As for the flights:
This is an area where I as a parent am probably more relaxed until I go about reading certain other allergy blogs and realize that other people are WAY more freaked out than I am about flying with a food allergic child. Who is to say whose approach is better? Some people won't fly with food allergic children because it plain scares them too much. Others bring wet wipes and make sure to wipe down all armrests, tray tables, etc. Then there's us. We're careful (as we always are) not to let Georgia eat anything containing her allergens, and we bring aboard plenty of Benadryl plus four Epipens just to be safe. But we don't otherwise take extra precautions when flying.
And now, a couple quick stories:
On the way down, Georgia got one tiny hive on her wrist. Didn't bother her. No idea what it was from. Could potentially have even been a bug bite. But it did make Joe and I exchange glances and think to ourselves, "What if?" I guess it made me wonder if I should actually be wiping things down more often? Seriously, though, you can't wipe down the whole world around you, right? So I am not sure that there's a rational point to doing so in limited instances. I would be happy to hear a counterargument from someone out there reading this.
On the flight back, we were cruising along and then heard the man in the row directly behind us say to his wife, "Honey, hand me my peanuts please." [CUE SOUND OF NEEDLE SCRATCHING ACROSS RECORD.] Okay, so this one resulted in even bigger exchanged glances and raised my anxiety level quite a bit. I can't fully explain why, I mean, it's not like he said, "Honey, hand me my peanuts please so that I can then touch the kid in front of me and make her eat them." Right? Besides, on our American Airlines flight they were selling mixed nuts for snacks, so it was just as likely that any other passenger could buy/eat/drop nuts, right? But still. There was just something unnerving about it, and it had me thinking that maybe those parents who board the plane and start wiping things down are not so crazy after all. I can almost guarantee you that had we been sitting in this man's seat after him (like on the next flight), Georgia would have gotten hives from contact with the nut residue. (Nut residue? Is that an actual thing? You know what I mean.)
Now, here's the part that I actually find hilarious. So amazing to me that you have no choice but to laugh. He was not just having a little snack pack of nuts, or a trail mix, or something like that. He was actually shelling his own peanuts on the plane. You know, like people normally do at a ballpark. In fact, ballparks are pretty much the only place that I have ever seen this (unless you count the reception desk at my father's office, but that's another story all together, and not a common business place snack offering, in my opinion).
I know he was just oblivious and not some kind of anti-allergy zealot, but I couldn't help thinking, are you kidding me? Have you been living under a rock to not know that some people are in favor of banning nuts all together on planes, and you think it's cool to SHELL whole peanuts about 12 inches away from my peanut-allergic child?
Now, don't misunderstand me. Although I found this all amazing, and it did cause me a certain degree of anxiety, I don't bear any ill will toward the man. In fact, later in the flight he entertained our 8 month-old by making funny faces, so I give him major nice guy points for that. I just kind of couldn't believe the nut thing.
So, there you have it. No real point or conclusion to all of this other than to say these things always get me thinking. Should I wipe surfaces more? Should I take more precautions when flying? Should I just try to relax?
And now, just for giggles (or shock value depending on how you view these things), here's a photo of me eating nuts on my very first flight with Georgia, when she was a baby and we did not yet know of her allergies.
{That's me with the fancy pinky, looking terrible but happy. Georgia would be the hidden baby under the blanket, just below the bowl of nuts.}
{That's me with the fancy pinky, looking terrible but happy. Georgia would be the hidden baby under the blanket, just below the bowl of nuts.}
Thursday, April 15, 2010
Help this study reach 1,000 participants!
I've written on this blog before about our family's participation in the Children's Memorial Food Allergy Study. I also feel a sense of obligation to encourage others to sign up, too, because they need 1,000 participants to make the whole thing worthwhile. (Well, that's not how they put it - I'm sure there's a more technical statistical term for it.) Anyway, I had been meaning to do something but finally today just got around to sending an email to certain friends attempting to drum up support. So I figured while I was at it that I would post some of the same information on this blog. (The info below is from the AllergyMoms.com website.)
According to a recent survey, 86% of all U.S. clinical trials fail to recruit
the required number of participants on time. Never have there been so many
studies of promising therapies for food allergies-but without qualified
participants, this life-saving research cannot move forward. By participating in
a clinical trial, your family will contribute directly to the search for better
treatments and a cure.
Of course, participating in a research study is
an important commitment. You're sure to have questions about the therapy being
tested, the medical exams you'll need to take, the demands on your time, safety
issues, and more.
To learn more, check out the following resources,
which provide information on current food allergy clinical trials, how these
studies work, questions to ask if you're thinking of participating, and more.
FAI
www.faiusa.org/clinicaltrials
To learn more about the specific study our family participates in, go to: http://www.childrensmrc.org/allergy/study/
Sunday, April 11, 2010
I Heart Faces: "I Heart Desserts"
The theme this week at the i heart faces photography website is desserts.
Recipes available here.
More dessert photos to be found here:
No birthdays to speak of in our household, but these cupcakes do represent a special occasion: Georgia's first time ever helping to decorate (and eat!) homemade cupcakes since her egg challenge in January. (For those following along, her tolerance of baked eggs continues to go well, and today she even ate the first pancake of her life at the ripe old age of 2 years, 8 months, and 2 days. Well, she had a few bites, anyway. Despite her excitement about trying the pancake, she didn't really dig in.)
Anyway, the cupcakes above are what happens when you click on a parenting website searching for new ways to handle your two year old's behavior and instead come away with said website's "best of" cake and frosting recipes.
Recipes available here.
More dessert photos to be found here:
Monday, March 8, 2010
Eggs, and Preschools, and Birthday Parties, Oh My!
There's quite possibly nothing more boring to read than blogging about blogging, but please bear with me for a moment. The problem with this blog is that I don't get around to posting my occasional post-worthy allergy thoughts, so they accumulate. After time passes, none seem important enough to post, or maybe they do, but then it's too daunting to write them all up, or I worry that it will all come across like I'm allergy obsessed because suddenly I have 6 allergy posts in 6 days? I don't know - clearly I'm over thinking all of this and just making excuses for what boils down to procrastination, so with no further ado, here is a dumping of some of these accumulated thoughts, boiled down as best as I can get them:
FAQ: How is the introduction of baked egg going?
Short answer is that it's going great - Georgia's been tolerating homemade baked goods without any reactions. Longer answer is that, as exciting as it was to be able to get started on introducing eggs to her diet, we've fallen off course in terms of following the doctor's protocol for introducing more and more egg. We haven't yet jumped on to the pancake step, because how am I supposed to think of recipes for getting her up to 1/4 of an egg per serving in her tummy three times a day? No, really -- that was a serious question -- does anyone have any suggestions? A serving of cornbread really only has about 1/8th of an egg at most, so I'd have to double the portion size and serve it at breakfast lunch and dinner to get us there. With cupcakes, I'd have to give her even MORE, because each cupcake would have less egg. I'm about ready to say screw it, things have been going fine, let's move on and try the pancakes.
FAQ: What is the rationale behind the introduction of baked egg? Is the idea that she is building up a tolerance to eggs?
Good question, but no, it's not about building up a tolerance to eggs. My lay person's way of explaining this is that baking the eggs at a high temperature ever so slightly changes the shape of the protein that she's allergic to, just enough that when she eats it her body no longer recognizes it as an allergen (i.e., her immune system stops treating the food in question as a dangerous invader that it needs to fight). I'll post a link to the relevant study sometime.
Ugh. Preschool.
Georgia will be old enough to attend in the fall. Aside from anxiety I have about taking that next step of having to trust Georgia and a bunch of other people (teachers, kids, etc.) to keep her safe, I've also been dreading just having the allergy conversation with the folks at the preschools we've been touring. Well, she got accepted to one, and the way it works is you accept and say you're going to attend while you wait to hear back from the others -- apparently this is pretty standard around here. So, we had our first allergy conversation with the preschool that she is, as of today, supposedly attending. (Can you tell I still have my fingers crossed about coming off the wait list at another one? For geographic proximity reasons, that's all.) I'll be positive here and say that the conversation went about as well as one could hope for. The woman giving the tour assured us that it would be no problem, that other children at the school did have food allergies so they were accustomed to dealing with it, and that we could leave EpiPens in the school office or with the classroom teacher, etc.. On the other hand, I have to be honest and say that even when given a pretty good answer, I felt like there was no possible way this woman could understand the fear that an allergy parent has. Because even when EVERYONE (parents, teachers, etc.) all have the best intentions, people sometimes make mistakes. I couldn't help but see the bowls of snack mix in the kindergarten classroom that we walked by and just start to worry. Georgia will be barely 3 years old when she starts preschool. Can I really hope to drill it into her head that she cannot share snacks with other kids? I think they have "snack parents" at this school that trade off bringing food in for snacks. I am hoping that we can get Georgia on a regime of just eating her own personal food rather than the provided snacks, even though the snack parents will be told not to bring things with nuts. Partially because in my opinion I can't really ask them to look out for any ingredients including nuts, fish, and sesame. (Although, how many preschooler snacks have a fish ingredient, right? I wonder about all of the DHA (fish oil) that's getting added to more and more things these days, though. Not sure if Georgia would have a problem with that or not.) But if we have Georgia just eat her own food, then will all of the other parents question why they're even being made to have to deal with my kid's food allergy and therefore just stop reading ingredients? (If she were in 4th grade, that might make sense, but I think at the preschool level it's still important to keep all those sticky pb hands and nut-crumbs, etc. as far away as possible - there's too much risk of contamination and sharing.) Is it time for me to just start trusting a little more, even though that might mean exposing my child to greater risk? I want to protect her (as any parent would). I have to balance that against the idea that I can't protect her from everything forever. Ugh. You can see I'm already going around in circles about this mentally. Broken record here, but can I just say for the one millionth time that it sure would be nice if a test for the severity of my child's allergies existed, so that I might only have to worry that she'll get a mild case of hives at school rather than worrying about something potentially fatal.
Other allergy parents
I feel comfortable discussing food allergies in this forum, but generally speaking I'm uncomfortable with it as a conversation topic. I guess I'm insecure, because I always assume the other person I'm talking to is judging me in some way - either judging me for having a child with food allergies (i.e., they must be assuming it's my fault!) or judging me for how I'm dealing with it (i.e., they probably think I'm being overprotective!). At a recent birthday party, though, it occurred to me that I'm perhaps even more uncomfortable and insecure about discussing food allergies with other food allergy parents. Isn't that awful? Aren't these the very people that should understand where I'm coming from the most? Yes, that is true. And I'm always happy to find them, except that there's no handbook for how to deal with children's food allergies, so I'm always a little bit dumbfounded as to how to address the fact that we don't all deal with allergies the same way. Perhaps the issue is that no one's way is the one and only "right" way, and yet I just so want to be doing the "right" thing, whatever that is. So anyway, at this particular birthday party, the allergy mom was allowing her peanut and tree nut allergic child to dive right into a bakery-bought cupcake with crumbled chocolate cookie as a topping while I was making Georgia have some more fruit and promising her that we'd get her a special treat later in the day instead. (I know, I'm horrible - I really should start bringing my own stuff to these parties, but I keep forgetting and then it's time to head to the party and we're usually running late already. Fortunately she's just young enough to still not really care about missing the treats, so I've been getting away with this.) I just sat there watching this other kid with her cupcake wondering, "Am I doing this all wrong? Am I being too uptight?" The mom in question happens to be a work friend of mine, so I was able to ask her whether her child still had food allergies. Answer - "Yes, but her allergies aren't severe - it would just be like hives or something. " Hmmm...already a different response than what our allergist would ever say. So I said, "But doesn't it make you nervous that one reaction isn't really predictive of the next? You know, that it could be hives last time, but um, something far worse the next?" (Don't want to say anything too terrible around the kids!) Answer - "I didn't know that. Our allergist never told us that." Hmmmm....for various reasons, I already had the impression that their allergist isn't the best. (My friend had even told me as much before.) But this is all very frustrating to me! Why aren't the allergists telling everyone the same set of information? Let me just tell you the two conflicting thoughts going through my head at the time: (1) Ugh! Other allergy parents that are not as vigilant as us are not helping our cause (see preschool discussion above). If she's walking around acting like possible nut ingestion is no big deal (she actually wants to try to "build up a tolerance" for her daughter by exposing her to more and more nuts (at home), despite her allergist having told her that that's not a good idea right now and her husband disagreeing with her as well), then how am I supposed to get other parents and school officials that come into contact with folks like her to understand that when my kid shows up, I expect them to take the whole allergy thing much more seriously?, and (2) Maybe she is the smarter one here. Because maybe if we look at our lifetime happiness levels, and the lifetime happiness levels of our children, her approach of being WAY more relaxed about food allergies and less protective will result in so much less anxiety and mental stress for her and her family that any medical consequences of the increased number of allergic reactions potentially resulting from her approach will be outweighed by the fact that they just didn't worry so much! I mean, I can guarantee you that she's not off thinking about this birthday party right now, writing a blog entry about it! : ) Maybe this is a case where ignorance really is bliss.
Anyway, it's like I want to go with conclusion #2 and just relax, but I can't get my mind to stop slipping back to the, "Yeah, that's all fine and well, but what if she DIES?" thoughts. You know what I mean? Ugh. Again, have I mentioned lately my annoyance with the fact that they cannot yet test for the severity of one's allergies?
Another reaction
Last week I picked up a loaf of bread at our neighborhood food co-op. The ingredients passed inspection, but Georgia ended up having a minor (skin) reaction to it. We think it was sesame, because other available loaves did include sesame as an ingredient. I feel like I should've known better, like my gut was telling me at the time not to buy the loaf because of those other loaves. But what does this mean? That we can only buy from national producers that can give me a better allergen statement, and we can never buy the farmer's market type stuff? Maybe. I don't know. I'll be doing a separate post later on my frustration with labeling.
Okay, that's enough dumping for today.
FAQ: How is the introduction of baked egg going?
Short answer is that it's going great - Georgia's been tolerating homemade baked goods without any reactions. Longer answer is that, as exciting as it was to be able to get started on introducing eggs to her diet, we've fallen off course in terms of following the doctor's protocol for introducing more and more egg. We haven't yet jumped on to the pancake step, because how am I supposed to think of recipes for getting her up to 1/4 of an egg per serving in her tummy three times a day? No, really -- that was a serious question -- does anyone have any suggestions? A serving of cornbread really only has about 1/8th of an egg at most, so I'd have to double the portion size and serve it at breakfast lunch and dinner to get us there. With cupcakes, I'd have to give her even MORE, because each cupcake would have less egg. I'm about ready to say screw it, things have been going fine, let's move on and try the pancakes.
FAQ: What is the rationale behind the introduction of baked egg? Is the idea that she is building up a tolerance to eggs?
Good question, but no, it's not about building up a tolerance to eggs. My lay person's way of explaining this is that baking the eggs at a high temperature ever so slightly changes the shape of the protein that she's allergic to, just enough that when she eats it her body no longer recognizes it as an allergen (i.e., her immune system stops treating the food in question as a dangerous invader that it needs to fight). I'll post a link to the relevant study sometime.
Ugh. Preschool.
Georgia will be old enough to attend in the fall. Aside from anxiety I have about taking that next step of having to trust Georgia and a bunch of other people (teachers, kids, etc.) to keep her safe, I've also been dreading just having the allergy conversation with the folks at the preschools we've been touring. Well, she got accepted to one, and the way it works is you accept and say you're going to attend while you wait to hear back from the others -- apparently this is pretty standard around here. So, we had our first allergy conversation with the preschool that she is, as of today, supposedly attending. (Can you tell I still have my fingers crossed about coming off the wait list at another one? For geographic proximity reasons, that's all.) I'll be positive here and say that the conversation went about as well as one could hope for. The woman giving the tour assured us that it would be no problem, that other children at the school did have food allergies so they were accustomed to dealing with it, and that we could leave EpiPens in the school office or with the classroom teacher, etc.. On the other hand, I have to be honest and say that even when given a pretty good answer, I felt like there was no possible way this woman could understand the fear that an allergy parent has. Because even when EVERYONE (parents, teachers, etc.) all have the best intentions, people sometimes make mistakes. I couldn't help but see the bowls of snack mix in the kindergarten classroom that we walked by and just start to worry. Georgia will be barely 3 years old when she starts preschool. Can I really hope to drill it into her head that she cannot share snacks with other kids? I think they have "snack parents" at this school that trade off bringing food in for snacks. I am hoping that we can get Georgia on a regime of just eating her own personal food rather than the provided snacks, even though the snack parents will be told not to bring things with nuts. Partially because in my opinion I can't really ask them to look out for any ingredients including nuts, fish, and sesame. (Although, how many preschooler snacks have a fish ingredient, right? I wonder about all of the DHA (fish oil) that's getting added to more and more things these days, though. Not sure if Georgia would have a problem with that or not.) But if we have Georgia just eat her own food, then will all of the other parents question why they're even being made to have to deal with my kid's food allergy and therefore just stop reading ingredients? (If she were in 4th grade, that might make sense, but I think at the preschool level it's still important to keep all those sticky pb hands and nut-crumbs, etc. as far away as possible - there's too much risk of contamination and sharing.) Is it time for me to just start trusting a little more, even though that might mean exposing my child to greater risk? I want to protect her (as any parent would). I have to balance that against the idea that I can't protect her from everything forever. Ugh. You can see I'm already going around in circles about this mentally. Broken record here, but can I just say for the one millionth time that it sure would be nice if a test for the severity of my child's allergies existed, so that I might only have to worry that she'll get a mild case of hives at school rather than worrying about something potentially fatal.
Other allergy parents
I feel comfortable discussing food allergies in this forum, but generally speaking I'm uncomfortable with it as a conversation topic. I guess I'm insecure, because I always assume the other person I'm talking to is judging me in some way - either judging me for having a child with food allergies (i.e., they must be assuming it's my fault!) or judging me for how I'm dealing with it (i.e., they probably think I'm being overprotective!). At a recent birthday party, though, it occurred to me that I'm perhaps even more uncomfortable and insecure about discussing food allergies with other food allergy parents. Isn't that awful? Aren't these the very people that should understand where I'm coming from the most? Yes, that is true. And I'm always happy to find them, except that there's no handbook for how to deal with children's food allergies, so I'm always a little bit dumbfounded as to how to address the fact that we don't all deal with allergies the same way. Perhaps the issue is that no one's way is the one and only "right" way, and yet I just so want to be doing the "right" thing, whatever that is. So anyway, at this particular birthday party, the allergy mom was allowing her peanut and tree nut allergic child to dive right into a bakery-bought cupcake with crumbled chocolate cookie as a topping while I was making Georgia have some more fruit and promising her that we'd get her a special treat later in the day instead. (I know, I'm horrible - I really should start bringing my own stuff to these parties, but I keep forgetting and then it's time to head to the party and we're usually running late already. Fortunately she's just young enough to still not really care about missing the treats, so I've been getting away with this.) I just sat there watching this other kid with her cupcake wondering, "Am I doing this all wrong? Am I being too uptight?" The mom in question happens to be a work friend of mine, so I was able to ask her whether her child still had food allergies. Answer - "Yes, but her allergies aren't severe - it would just be like hives or something. " Hmmm...already a different response than what our allergist would ever say. So I said, "But doesn't it make you nervous that one reaction isn't really predictive of the next? You know, that it could be hives last time, but um, something far worse the next?" (Don't want to say anything too terrible around the kids!) Answer - "I didn't know that. Our allergist never told us that." Hmmmm....for various reasons, I already had the impression that their allergist isn't the best. (My friend had even told me as much before.) But this is all very frustrating to me! Why aren't the allergists telling everyone the same set of information? Let me just tell you the two conflicting thoughts going through my head at the time: (1) Ugh! Other allergy parents that are not as vigilant as us are not helping our cause (see preschool discussion above). If she's walking around acting like possible nut ingestion is no big deal (she actually wants to try to "build up a tolerance" for her daughter by exposing her to more and more nuts (at home), despite her allergist having told her that that's not a good idea right now and her husband disagreeing with her as well), then how am I supposed to get other parents and school officials that come into contact with folks like her to understand that when my kid shows up, I expect them to take the whole allergy thing much more seriously?, and (2) Maybe she is the smarter one here. Because maybe if we look at our lifetime happiness levels, and the lifetime happiness levels of our children, her approach of being WAY more relaxed about food allergies and less protective will result in so much less anxiety and mental stress for her and her family that any medical consequences of the increased number of allergic reactions potentially resulting from her approach will be outweighed by the fact that they just didn't worry so much! I mean, I can guarantee you that she's not off thinking about this birthday party right now, writing a blog entry about it! : ) Maybe this is a case where ignorance really is bliss.
Anyway, it's like I want to go with conclusion #2 and just relax, but I can't get my mind to stop slipping back to the, "Yeah, that's all fine and well, but what if she DIES?" thoughts. You know what I mean? Ugh. Again, have I mentioned lately my annoyance with the fact that they cannot yet test for the severity of one's allergies?
Another reaction
Last week I picked up a loaf of bread at our neighborhood food co-op. The ingredients passed inspection, but Georgia ended up having a minor (skin) reaction to it. We think it was sesame, because other available loaves did include sesame as an ingredient. I feel like I should've known better, like my gut was telling me at the time not to buy the loaf because of those other loaves. But what does this mean? That we can only buy from national producers that can give me a better allergen statement, and we can never buy the farmer's market type stuff? Maybe. I don't know. I'll be doing a separate post later on my frustration with labeling.
Okay, that's enough dumping for today.
Tuesday, February 16, 2010
Operation Pancake
For anyone who's interested, here's the protocol for phasing baked eggs into Georgia's diet that they sent us home with, verbatim. (I'm not sure why I'm posting this in so much detail, maybe so I'll remember it years from now? The lawyer in me also now feels compelled to add that I'm not posting this as a suggestion that anyone else try it. Talk to your doctor - duh.)
It has been determined that it should be safe to introduce egg in a baked form into your child's diet. If your child experiences any possible reaction or concerning symptoms, stop the food and contact us for further instructions. Once your child has clearly tolerated baked goods with 1/8 to 1/4 of egg per serving, you can add similar products up to three servings a day, as well as commercially prepared baked goods that are otherwise safe. The following is a genreal plan for the introduction of baked egg - you can do this as often as once a day to start, although you can also progress as slowly as you like and do this over weeks or months rather than days:
Home Introduction of Baked Egg
It has been determined that it should be safe to introduce egg in a baked form into your child's diet. If your child experiences any possible reaction or concerning symptoms, stop the food and contact us for further instructions. Once your child has clearly tolerated baked goods with 1/8 to 1/4 of egg per serving, you can add similar products up to three servings a day, as well as commercially prepared baked goods that are otherwise safe. The following is a genreal plan for the introduction of baked egg - you can do this as often as once a day to start, although you can also progress as slowly as you like and do this over weeks or months rather than days:
- Begin with any baked egg recipe - cookies, cakes, muffins, cupcakes, brownies - and use one egg for a recipe that makes 12-16 servings. Your child can have one full serving to start, therefore will get 1/12 to 1/16 of an egg to start. You can also use a recipe with 2 eggs and give one-half serving.
- If there is no reaction to these products, you can increase so that your child can get up to 1/4 egg per servings.
- If these products are tolerated with no signs of a reaction, you child may have them up to 3 servings a day.
- After two to three months, you may introduce pancakes or waffles.
- You can then contact us to discuss the possibility of introducing straight egg if you desire. Up until this point, you also need to continue to avoid mayonnaise, custards, ice creams, meringues, and other foods with concentrated, less cooked eggs.
Sunday, February 14, 2010
More weirdness...
Just writing to say that in the past couple of weeks we've had a few more mild skin reactions around here that are apparently from kisses.
Like, Joe went to a business lunch and had crab cakes, later came home and gave Georgia a kiss hello, and voila, big red marks.
None of these incidents has been any big deal, but still it's disconcerting. I don't know if she's somehow getting more sensitive, if we've gotten too lax, or if we've just been unlucky.
The moral of the story is: we're now doing a better job of brushing our teeth after eating any of Georgia's allergens.
Like, Joe went to a business lunch and had crab cakes, later came home and gave Georgia a kiss hello, and voila, big red marks.
None of these incidents has been any big deal, but still it's disconcerting. I don't know if she's somehow getting more sensitive, if we've gotten too lax, or if we've just been unlucky.
The moral of the story is: we're now doing a better job of brushing our teeth after eating any of Georgia's allergens.
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